Shaking all over - and not Elvis

[Eliza-Jane]

I have been on medication for nearly 12 months, I am currently on 4 tabs a day of Stalevo 200 and have been for most of this year. When it is wearing off after about 4 -5 hours I get shaky, sometimes more than others. Is this PD or am I addicted to Stalevo and hanging out for the next hit? I only had a tremor in my right arm last year. Now I feel a wreck all over.

[BG86]

I don't take Stalevo but do take sinimet and Rytary. I can shaky and anxious when it's near time for next dose but Dr's adjustment of amount and frequency of medication has helped. I don't think it's addiction just PD.

[JohnPepper]

You may find that you have essential tremor as well as a resting tremor.

Instead of putting your whole effort to overcome the Pd symptoms by taking medication, why not start doing exercise, which is the ONLY WAY to overcome some of the symptoms of Pd?

Pd medication does nothing to slow down the progression of Pd.

Look at my profile and see what I have done to overcome my Pd symptoms. I have led a normal life since 2002, although I still have Pd.

[Eliza-Jane in reply to JohnPepper]

I don't want an essential tremor as well, dealing with enough.

I am currently reading your book and am a firm believer in exercise, it has been part of my daily routine for many years. Now that I think of it, I dropped my routine when we had to travel north on the death of a close family member. Then I wasn't well with a virus and chest infection for some weeks, then hubby was hospitalised for a few weeks. It's been a fun year. You have turned on the light bulb. I still do a one hour brisk walk with friends most mornings, but I haven't been using my exercise equipment for strength, or doing my half to one hour stretch and balance exercises in the afternoons. I have slackened off and I guess I am now paying the price. Thank you for taking the effort to reply to me, and especially for writing your book. I am nearly half way through, I stopped when you referred to Norman Doidge and began reading The Brain's Way of Healing by Norman Doidge. I got to the part where he told your story, decided to go back to get the story direct from you and am currently completing reading your book. Actually, maybe I can hold you partly responsible for me not exercising enough, I'm sitting down too much reading your book!!

[JohnPepper in reply to Eliza-Jane]

How I love reading articles like your's. You are human, like the rest of us! Life does not always go in the direction we want, but that is life.

You raise the question of chest infections. That is another Pd symptom. The muscles around the trachea often stop functioning, which results in an accumulation of phlegm in the chest and that phlegm becomes infected.

What you have to do to overcome this s to 'manually' clear your chest a couple of times each day. What I mean by manually is, without coughing, expel air out of your lungs as fast or hard as you can. You would be amazed at how much comes up. It is revolting but sure beats getting chest infections.

[Eliza-Jane in reply to JohnPepper]

Thanks for that John. Now that I have your undivided attention, I often feel quite nauseous and I blame medication. Can PD make you feel sick? I want to blame medication to give me one more reason to strive to get off it. I see my Neurologist in a couple of weeks but I don't trust him with the full truth. He loves medication.

[JohnPepper in reply to Eliza-Jane]

I know of nobody with Pd, who is not on medication that has nausea. I personally have never had nausea, even when I was on Levodopa medication, not that I can remember. Here is an excerpt from my book:

People who take MAOIs should be aware of the symptoms of high levels of tyramine, including severe headache, blurred vision, difficulty thinking, seizures, chest pain, unexplained nausea or vomiting, or signs or symptoms of a stroke. Patients and caregivers should seek immediate medical attention for patients who develop any severe headache or other atypical or unusual symptoms not previously experienced.

Do you eat a lot of warmed-up food or any of the following: mature cheese, dried meat, or any other food with high levels of tyramine?

I have come across many people taking leveodiopa who had nausea and were told to continue their medication until it stops.

[Hikoi]

Eliza-Jane

I know you aim is to be off levadopa which is your choice but just a comment about stalevo. That is levadopa carbidopa with another drug called entacopone which makes L/C work more effectively. There was a time they gave stalevo from diagnosis but it is unusual to do that now. They start on much lower dose of C/l and very gradually increase then later add the enhancer meds eg entacopone.

I do wonder if your symptoms might be resolved if you are on a lower dose of only c/l but only trying will tell. I too get those feelings between doses but I didnt for well over 5 yrs.

You can find other info and check out members by reading earlier posts.

Good luck.